Abstract
A valid measure of quality of life is important for clinical goal setting and for evaluating interventions. In the amnestic dementias, proxy-raters (e.g. friends, families, clinicians) typically rate quality of life lower than the self-ratings given by the person with dementia – a proxy bias. This study investigated whether the same proxy bias occurs in Primary Progressive Aphasia (PPA), a language-led dementia. Quality of life was measured in 18 individuals with PPA using self-ratings, and proxy-ratings by their main communication partner, using the Quality of Life in Alzheimer’s Disease Scale. There was no strong evidence for proxy bias at a group level, with no consistent pattern across dyads, where proxy- and self-ratings did not show good levels of agreement. We suggest that self-ratings and proxy-ratings of quality of life in PPA are not interchangeable. Higher-powered investigation of the patterns observed here is warranted in future studies.
| Original language | English |
|---|---|
| Pages (from-to) | 1-13 |
| Number of pages | 13 |
| Journal | American Journal of Alzheimer's Disease and other Dementias |
| Volume | 38 |
| DOIs | |
| Publication status | Published - 15 May 2023 |
Bibliographical note
Copyright the Author(s) 2023. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.Keywords
- dementia
- aphasia
- primary progressive aphasia
- wellbeing
- quality of life
- proxy
- ratings
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